Sunday, August 29, 2010

After a long but productive work week, I joined Dori at the cancer clinic Friday afternoon for our meeting about "the plan."

Unfortunately, Dori's counts were a little off (higher white blood cell, slightly lower platelets and red blood cell), so that has put us in a bit of limbo. Her doctor decided Friday to adjust some meds that may have caused the count ambiguities. We return Tuesday to see where her counts stand. If they are in the right ballpark, she might be scheduled for consolidation chemo in two weeks and then a reduced intensity transplant in late October or early November.

My hope late Friday was for a weekend of peace and relaxation. The complete opposite happened. Saturday morning, Will and I rode our bikes nine miles through beautiful farmland. It was great, but my phone rang twice toward the end. Kathryn didn't feel well, Dori said. She was getting sick often.

I arrived home, thinking our girl had a stomach virus. She was in rough shape for hours and spent most of the afternoon in the bathroom. Behind our house, some neighbors who have been partying like frat boys all summer finally went over the top ... their music and chatter was supersonic. I called the police, and encouraged other neighbors to join me. Perturbed, I needed a siesta, so Dori told me to get back on the bike. I rode another 12 very hilly miles. When I returned home, the neighbor's noise had abated but another task remained. Kathryn felt worse.

At 5 p.m., I took Kathryn to the emergency room at Vanderbilt's Children's Hospital. The waiting room was chaos, with one baby raging for 90 minutes straight while we waited. After a two-hour wait, they put us in a room near the raging baby, of course.

During the constant screaming, I processed what could be wrong with Kathryn. Appendicitis? Girl issues? A bad virus? Her counts showed an elevated white blood cell count, and you can imagine I needed a doctor NOW to tell me her other counts were ok. He arrived, and said they were. Whatever the diagnosis would be, I could now deal.

My sister brought me dinner and a bagel for Kathryn, once they cleared her to eat. The raging baby stayed at it most of the night. I told myself over and over bad things always end, and this would, too.

They never figured out for sure what was wrong with Kathryn. She was so dehydrated she needed four IV bags of fluid. An ultrasound showed a possible cist on her ovary that may have ruptured. We left the hospital at 3:15 in the morning, a 10-hour stay. We didn't sleep at all, and I spent today napping and feeling out of sorts. I still feel way off, as if severely jet lagged. Kathryn feels better, just very sore and exhausted like me.

I needed some good news today. Late today, as I slept and recovered, Will ran his first cross-country meet of the year. My Mom and sister cheered him as he ran his personal best, a 6:45 mile, and posted his best finish, 13th place, while competing against older kids in the 6th grade level. After the summer he's endured, it was nice to see his smile tonight, which helped me tremendously.

At some point, I will find much needed peace and quiet. For now, that is not my life. This weekend's positive? My family may be down a bit and on edge a fair amount, but we are intact.

Tuesday, August 24, 2010

Dori's complete cytogenetics report is in, and we learned her marrow has no abnormalities. Great news! Donor DNA is 97%, while Dori's DNA is 3%. We'll likely receive a doctors' proposal late Friday.

I bought a hybrid bike Saturday to keep pace with Will. The bike I had been riding was too small and bad for my back. I love my new ride, a simple seven-speed that's a cross between a mountain bike and road bike.

Will and I rode 10 flat miles Saturday, 15 hilly miles Sunday morning and five tonight after dinner. I ran three with Pepper this morning, when we finally had the first true whiff of fall air. Tonight, it feels like 60 even though it's 80.

It's been fun scaling some of the challenging hills in our neighborhood. Will is getting more confident on the bike and stronger each ride. The best purchase of 2010 has been his new bike.

Speaking of scaling hills, Dori walked a mile on the treadmill today. This is a quantum leap from even last week when five minutes of uneven walking was an accomplishment. Her rash is essentially gone, as is the itching. Knee pain from the steroids also abated.

We've had some fairly feisty moments as a family the last week. My take is it's been a dash of post traumatic stress syndrome. Fighting siblings with excessive drama, crankiness, and an unfiltered comment or two. We've all had some moments, and I've been no saint.

The tonic? Actually, an overnight business trip helped. I needed some air, and so did the family. I guess the bike has been the gin.

Friday, August 20, 2010

Hans appears to have done his thing. Now that Dori is in remission, which we learned yesterday, we get a real break and much better outlook.

Throughout this journey, we've been given or seen percentages. Three years ago, Dori read she had a 21% chance of five-year survival with AML. Last month when she didn't reach remission, we were told the graft vs. leukemia effect she needed had a 10% to 25% chance of occurring.

My wife is mathmatically inclined. Her brain likes numbers and analyses. I come more from the other side of the brain. Tell me something isn't likely or possible, and I'll do what I can to prove you're wrong.

Odds don't mean jack squat to me. Hell, we're Vanderbilt fans, we know what being an underdog is. Every situation is different, and the oddsmakers don't know what we're up to or what we're doing.

Let me tell you about Liz, part of our wonderful team. Dori's roommate in college and sorority sister, Liz remains a very close friend. Liz has called or texted me almost every day since Dori's relapse. Some days, when I'm exhausted or behind, I think about skipping a day of catching up with Liz. That would be a mistake.

Liz the Great has made a point to keep about 10 sorority sisters across the country informed about Dori. In July, these fine ladies pooled resources and bought Dori the iPad she loves. Because Liz is keeping their close-knit group well informed, Dori receives several e-mails a day from them on the iPad they gave her. They are part of a connected team that keeps Dori thinking and moving. Oddsmakers don't know about Liz and those women in Atlanta, North Carolina and elsewhere.

There are many other special people who are in the foxhole with us. Of course, our families. Dori's boss is a blood cancer survivor and great guy. My friends Jim and Heather from Team in Training communicate often with Dori. Sweet Mariesa and Mary Belle are extraordinary cheerleaders. Our friends from the kids' school are amazing ... Melissa, Elizabeth, Kathy, David and Mona, Wendy and Rob, and the list goes on. We are surrounded by many big-hearted people, too many to list, who approach this challenge like we do. The odds can kiss our asses.

I'm relieved right now, but not euphoric. I'm not even registering in the middle of the Happy Meter. Underneath, I'm really glad we're in a meadow, alive with flowers and chirping birds after a soothing rain. But I'm staying reserved, I think, for several reasons.

I know this isn't over. I know I better not get giddy, or jinx losing the momentum. I'm not superstitious, I think, though I do always put the first shoe on my left foot and never step on the third base line. As a friend said yesterday, you know what you guys are dealing with, so that's why your enthusiasm is reserved. True, but even I've surprised myself with the temperate reaction.

It's a strange feeling, strange place, yet good at the same time. It certainly beats the alternative.

Tuesday, August 17, 2010

Our family received the news we wanted late today. Preliminary results indicate Dori's marrow shows an improving picture. We'll get flow cytometry results in a day or two, which will give a more complete picture and confirm the preliminaries. Our Caringbridge site (look left for the link) has more information.

For now, please join me in a group "phew."

The word Dori keeps using is "relief." I don't feel anything but relief. Not calm, not joy, not happiness quite yet. Just relief, like Dori. I imagine I'll let loose with tears and other emotions, but I'm probably waiting for final results before progressing. Dori already had herself a serious cry.

Dori looks great. My sister, Mom and I can't get over the rapid turnaround in Dori's energy, appetite and appearance. A few weeks ago, I was catching Dori in my arms in the darkness of our hospital room, when she blacked out several times from the teardown of chemo. Then, Dori was in awe of her appearance and condition, removing exfoliating skin to pass the time, fixated on her swollen right eye, and continually applying special lotions and cremes to soothe her aching, purple and rashing skin. She ate little, doing well to consume a third of her normal diet. Did I leave out anything? You had to be there. Be glad you weren't.

Thankfully, Dori was surrounded by the A Team. My Mom, sister Anne, Dori's sister Kathy and several close friends stood watch when I wasn't there. Collectively, with the help of great staff, and I mean great, we helped Dori pass a major test. But Dori had to do the hard work. We just had to do what we could and we watched in awe.

It would appear we will advance to the next round. Clarity will arrive when it arrives. Until then, please join me as I toss back a glass of our finest.

Saturday, August 14, 2010

This afternoon's heat index was 109 degrees. And like A Flock of Seagulls, the stupid kind, I ran.

Flushed and hot at mile two, despite working frozen water over my neck and forehead, I altered my plans. My six miler became a combo run-hike, amounting to four miles. The heat wave is supposed to break soon - and it better - before my language deteriorates.

Dori has had some good days. This morning, she woke early to make waffles. Will was fired up ... he loves his Mom's waffles. Kathryn went with my wonderful Mom and sister Anne to the infamous East Nashville Tomato Art Festival. Anne sent the following picture of Mom, which she titled appropriately, "Hot Tomato."

Our good friend and Will's godfather Al stopped by this morning for a visit, while our good friend Kathy dropped off dinner this afternoon. Dori is eating well and looking better every day. Her counts are good, and she's smiling and sounding like Dori. A few weeks ago seem like years ago. Time does funny things when you're pointing a ship through a hurricane.

Dori's bone marrow biopsy is scheduled for Tuesday morning. Until then, we're chillin' in the steamin' stew that's known as the Deep South in August. We are LOVING the break.

Friday, August 13, 2010

Wednesday, August 11, 2010

I have enjoyed being at work the last two days. It's been a glimpse of normalcy.

I've also enjoyed watching Dori eat and sleep well. Man, does she deserve that. She's looking better each day, and I know she's enjoyed having her Dad here. The reprieve and company have been welcome.

Screw running in this weather. At 8:30 this evening, it's 90 degrees with a "feels like" of 99. Sheesh. Who wants to run in that? I'm glad I ran 10 last weekend and rode the bike Monday with Will. For now, I'll wait a few more days for weather that's not ridiculous.

Tonight, Dori spoke with a friend from her brief teaching career who has been diagnosed with non-Hodgkins lymphoma. The conversation, the side I heard, was palpable. I could see the emotion, however, on both sides. Dori encouraged her friend with perfect words only a fellow combatant can offer. Dori's next clinic visit is Friday, and she'll see her friend there.

It looks like Dori will have a biopsy mid week and then we'll get a plan proposal. The kids start school tomorrow, and we're glad. They need some routine, though they've been fairly active this summer. I will say we have too many electronic devices in our house. Way too many.

Sunday, August 8, 2010

Dori returned home late yesterday afternoon. She cried on the way home, reflecting on the last month of hell she endured. Who wouldn't?

We then had to wait an hour at the pharmacy for seven meds. They only had four and we had to have one last night. After four phone calls and plenty of waiting, the needed medication was procured by someone special. Last night, my sister drove to the hospital to pick up and deliver to our house.

Dori spent last night in our oversized chair watching TV with Will, gobbling up chicken and rice (and an ice cream sandwich!), and telling our dog Pepper she missed him and loves him. I played some of her favorite songs, "Whenever I Call You Friend," among them. We love the line, "In every moment there's a reason to carry on," in particular these days. I tossed back some French rose and soaked up the scene.

Yesterday morning at the hospital, I rose before dawn for a run, my first in five days. I had considered a 10-miler with running buddies, but didn't pursue for two reasons - I needed to be with Dori and I'm not in good enough shape to jump to that mileage and have a sane day. Yesterday included plenty of packing, unloading and cleaning.

So I ran 4.5 glorious miles in the best weather we've had in a month. A cold front dropped the humidity and temperature into the high 60s. I couldn't help but think the relieving conditions were commensurate with Dori's pending hospital discharge. I returned to Dori's room before 6:30, and began the all-day process of checking her out of prison, I mean, the hospital.

Dori is a favorite of the nurses and care partners, because she treats them the way they deserve ... like superstar royalty. I cannot imagine Dori or I getting through this marathon without their support. They just know how to keep patients like Dori and caregivers like me moving forward, and they rose to the occasion at some tense moments, particularly when Dori was blacking out and flashing some feisty GVHD-related rashes. The best of America works in the hardest of environments, and we are fortunate because of it.

We're in the clinic this morning, and they are just as solid here. One of the nurses said, "So you were upstairs for 30 days. Wow." Another just said something similar.

Wednesday, August 4, 2010

This morning, my daughter called me at the hospital and excitedly said, "Dad, we have a hummingbird!"

Let me share what this means to me. In April, I put out a hummingbird feeder, anticipating last year's hummingbird would return soon thereafter. May, June and July passed, and no hummingbird. I've thought about moving the feeder. Once, I pondered taking it down, a thought I quickly dismissed with an inward tongue-lashing.

Now that we have our new visitor, I am glad we were patient. To have given up hope would have been counterproductive. These days, I'm frustrated at times and often tired, keeping up with so many, many things. But I won't succumb to hopelessness.

Hello from Jim

Welcome to my blog, Run for Dori. My wife, Dori, passed away in June 2011 from leukemia (AML) after a determined four-year battle. Please consider supporting several programs (listed below) dedicated to finding a cure for blood cancers and assisting patients and families. Please consider registering with the National Marrow Donor Program that helped save her life in 2007.